Silent reader – need help!

[Anonymous]

Where to start…my almost 4 month old has protein allergies and severe reflux. At 4 weeks old she had green and bloody/mucousy stools. I went off dairy/eggs/wheat/soy and eventually did TED and have been on it for 2 months. She is finally stinky gas free and just in the last week her hemoccult strips have also been negative for every poop – HUGE WIN.

Her reflux on the otherhand is SO MUCH WORSE. She started on zantac then went to prevacid and had what the GI dr told me was probably an allergic reaction, puking, crying nonstop, etc. She is now on Nexium and tomorrow will be a full 2 weeks. She had the worst weekend ever, screaming her pain screams all day long, barely slept, refused to nurse, just awful. I feel so bad for her and I just want to find her the right answer. I’m convinced we’ve cleared the colitis/allergy/stomach issues with the TED and her reflux is separate because its not clearing with the diet changes. I feel like the Nexium is basically like she’s not medicated at all because she is seriously awful. I called the on call GI dr today who told me to give mylanta before every feeding and call back tomorrow to talk to her specific GI. When I called before about the prevacid, they told me Nexium was the next option and it was basically the only other option besides prevacid. I asked about Zegerid or Prilosec and was told they don’t give it to children under 12yrs old. I’m not sure what they’re going to tell me tomorrow, but I need some help on where I should go from here. Try the OTC route if they won’t give me anything other than the Nexium? Does anyone have any experience with Nexium? I know they say it takes 2 full weeks, today was the end of the 2nd full week and she is definitely not any better…should it take more time?

Thanks in advance for any help. I am so thankful for this forum, it has given me so many answers in the past month!

Shannon

[hellbennt]

great news about diet!

for meds:

are you giving them right?

what form of nexium has she been on for two weeks?

TELL dr you need CAPSULES & then order one of the products

in the meantime, if it’s powder packets they need to be given on an empty stomach, followed by a ‘meal’ 30 minutes later…

if you have any zantac, give that, too, spaced 4 hrs from the nexium

if you’re giving mylanta this also needs to be spaced 4 hrs from the nexium

the mylanta CAN be given w/ zantac

needs to be mylanta cherry supreme-it’s the one variety of mylanta that does not contain aluminum. it’s hard to find, but you can find store brand equivalents try: rite-aid, cvs brand, walmart, target, Bartell Drug (West coast), Dollar General, meijer, etc- just look for one that does not list aluminum in the ingredients. you can give 1ml up to 5 times a day- it’s safe, even for newborns. if you see loose stools back off

[Anonymous]

The nexium we have is the packets and we’ve done pretty well with the empty stomach and 30 min wait. A couple times I have nursed her at the 20min mark, but overall I’d say 90% of the time we’ve been right on.

I found the mylanta at cvs a few weeks ago so thats what I was giving her occasionally for flare ups and then all day yesterday before feeds. She was really gassy throughout the night last night…does mylanta cause gas? It didn’t seem to really bother her, just curious if thats a normal side effect.

I have been giving her the zantac too on occasion, it honestly seems like its just like water for her. It worked great early on, but it doesn’t seem to help anymore. Maybe I need to recalculate her dose.

I’m waiting on a call back from the gi now and will ask for capsules, I just am not convinced that nexium is going to work for her if we haven’t even seen marginal improvement w her on it for 2 weeks. Last night was probably her worst night since she was 3 weeks old 🙁

Thanks for all your suggestions, hoping to get things turned around for her soon!

[hellbennt]

also, with the diet,

you might also want to read & learn about probiotics…

probiotics, brands used:

https://www.infantreflux.org/forum/forum_posts.asp?TID=8970&PN=1

and/or even some enzymes (you would take the digestive enzymes):

erin posts that mentions enzymes:
https://www.infantreflux.org/forum/forum_posts.asp?TID=12781&KW=enzyme

https://www.infantreflux.org/forum/forum_posts.asp?TID=12610&KW=enzyme

https://www.infantreflux.org/forum/forum_posts.asp?TID=12227&KW=enzyme

Post from me:
https://www.infantreflux.org/forum/forum_posts.asp?TID=12200&KW=enzyme

Have you checked doses for both nexium & zantac?

here’s Prevacid 101 (the 2nd link jackie tried to give)- scroll to the bottom, last post in purple:

https://www.infantreflux.org/forum/forum_posts.asp?TID=1936&PN=0&TPN=1

Zantac dosing

– my/other’s question (has axid & pepcid doses, too):

https://www.infantreflux.org/forum/forum_posts.asp?TID=8288&PN=1

https://www.infantreflux.org/forum/forum_posts.asp?TID=14939 this is

the link to buy the product to make a liquid that you can give at any time

[Anonymous]

Thanks so much for the info! She has been on Klaire labs probiotic for over a month and it seems to be helping her. It’s so hard to say what works and what doesn’t sometimes because she has so many good and bad (mostly ) days. I haven’t started digestive enzymes, asked the GI appt them and he said they don’t work… We are actually going to a naturopathic pediatrician on Wed and in our 1st over the phone consultation she mentioned enzymes so I’m sure I’ll be starting them soon!

The GI called me back today and told me to keep giving her the Nexium, but to also give her zantac in the afternoon and the evening. I also figured out a better way to give her the Nexium this am (had been trying to give it to her in a 1ml bottle of water). Today I made a paste and put it on the binky a few different times and she sucked it all right off. She’s not really used to bottles since I’m nursing her and haven’t left her thru all this reflux/colitis mess. Today was actually a much better day than yesterday so hoping adding hte zantac twice a day is the answer for now and she is even better tomorrow. The dr said to let them know in 2 days if she’s not better and the next step is to increase the Nexium. She is currently on 10mg in the am.

She is approaching hte 4 month mark and I’ve noticed the frequency and amount of spit up has significantly increased over the past week. I know PPI’s don’t stop the spitting up, just alleviate the pain associated with the reflux, but is it pretty normal for spitting up to increase significantly? I just want to make sure it’s not associated with the meds because it’s been crazy how much she is spitting up. She was mainly a silent refluxer until about 2 weeks ago.

Thanks again!

[hellbennt]

spitting up from a silent refluxer can be a good sign- they’re not fighting the burn & swallowing it back down- they feel better so it’s now coming up- I hope this is the case for your baby-

as far as the nexium goes, I’d try giving it two times a day! even three!

sounds good so far, just that perhaps the meds need a little bit adjustment/increase (you can always back down)…

[Anonymous]

That makes sense and I really hope that is what’s going on with her with the spitting up! I’ll happily take the huge mess if its a sign of her feeling a little better!

With the nexium, would you try breaking up the 10 mg into separate doses? We don’t have enough prescription to give her 10 mg doses multiple times a day, but I could break the one packet into separate doses if thats what you mean? I really need to get it in capsule form so I can order one of the products that don’t make me have to time for feedings!

Thank you again for your help, it amazes me how much you know about all of this. I feel like it has become my new obsession over the part couple months to just read and read, searching for the solution to make her the happy baby I know she wants to be.

Thanks!

[Anonymous]

Don’t know if you’ve started the enzymes yet but I have heard numerous people say that they’ve tried probiotics and enzymes and haven’t seen a lot of results. So I decided to do some research on them and here is what I read in an article titled “How To Choose Your Supplements”. Just thought it might be of help to you.

ENZYMES Look for plant enzymes that are specifically produced for use with foods. All enzyme supplements are not the same. They should:

Be supplied as plant-based food enzymes. Plant based enzymes are more effective than animal or pancreatic enzymes. For a couple reasons. First, plant enzymes have a broader pH activity range, which means they can help digest foods and remain active throughout the intestinal tract. Second, they do not interfere with the natural functioning of the body and therefore have no side effects. Enzymes such as pancreatin, trypsin and chymotrypsin are animal/pancreatic enzymes. Avoid enzyme formulas that contain these ingredients. Instead look for formulas which list enzymes such as protease, lipase, amylase and peptidase.

Include all the necessary co-factors (vitamins, minerals and coenzymes). All the nutrient cofactors (vitamins and minerals) must be present for each enzyme to be fully active and to insure maximum enzyme activity.

Include the full spectrum of enzymes. When choosing a digestive enzyme formula, an additional recommendation applies. Specifically, a digestive enzyme formula should include the full spectrum of enzymes necessary to break down all types of foods completely. To completely break down a food, all the enzymes for each component of the food must be present. This means that a digestive enzyme formula should not only include the major enzymes (e.g. protease, amylase, lipase and cellulase), but the formula should also include the enzymes for the next steps (e.g. peptidase, lactase, glucoamylase and malt diastase).

Also with animal based enzymes the body can become dependent on them and slow down in making its own. Whereas plant based enzymes encourage the body to make more of its own.

PROBIOTICS Look for a high-quality stabilized probiotic. Probiotics are live microbial food supplements that provide health benefits by improving the intestinal balance of microflora (gut bacteria). They should:

Exert a beneficial effect on immunity and digestion. To have the most beneficial effect on health a probiotic supplement should contain at least eight different strains of bacteria (the ideal is twelve or more).

Be nonpathogenic and nontoxic. To ensure that the bacteria are truly beneficial and not harmful look for the following bacteria listed on the label Lactobacillus acidophilus, L bulgaricus, L brevis, L lactis, L reuteri and Bifodobacterium longum . (This list is not all inclusive)

Contain a large number of viable cells. One way to help ensure that a supplement contains a large number of viable cells is to look for whole food fructooligosaccharides (FOS), such as Jerusalem Artichoke. Fructooligosaccharides, more commonly known as FOS, are a class of simple carbohydrates found naturally in certain plants (Jerusalem artichokes, onions, and bananas) and act as “food” for the bacteria in the probiotic supplement. Be sure that the FOS (Jerusalem artichokes, onions, and bananas) listed on the label is a whole food and not a chemically produced FOS (Fructooligosaccharides), which may have toxic effects.

Be capable of surviving metabolism in the gut. The probiotic should be in capsule form to help ensure that the bacteria survive the trip through the digestive tract to the colon.

[Anonymous]

Thank you Martha, very helpful information!

[Author]

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